Wednesday, November 19, 2014

Houses of horror

It’s no secret from you folks (though it still is from those who need to know) that I have taken scores of photographs documenting neglect at C.’s school (like the one on the right). Most of them show children dumped on or beside sports room equipment, utterly unsupervised and clearly endangered.

This week, I was reminded of the opposite extreme of the care spectrum: the imprisonment of children with disabilities. Two new articles describe brutal, sadistic conditions endured by children with disabilities living in institutions, not in Africa, not in Asia, but in first-world Europe.

One is about author J.K. Rowling’s charity, Lumos. Nearing the end of The Silkworm, my second novel by Rowling, I had begun to feel rather chummy with her. Little did I know that she and I are linked in a way I never imagined. Her cause of choice happens to be the plight of children with disabilities. In 2005, after reading about children caged in beds, she founded the charity, Lumos (I never read Harry Potter but apparently it’s a light-giving spell) dedicated to shutting down all such institutions.

JK Rowling

The goal of Lumos is to transfer all the children either to their own or to foster families and provide them with ongoing support. Along the way, Lumos has gathered some shocking statistics:

It is cheaper to fund a child’s care with a poor family than in an institution

One million children with disabilities, most of whom are not even orphans, are institutionalized in Europe alone

Some of you may not be aware of how horrific these institutions look. The second article on this topic will clear up any confusion. It describes in graphic detail the conditions in Greek institutions for children with disabilities. The accompanying photographs set my guts wrenching.

A person being fed through the bars of a caged bed in this photograph taken in 2008

A child in a cage, photographed at the centre in 2008

Wooden bars separate part of a room - a person lies behind the bars and a woman puts a cover over someone lying on a bed, 2008

The new director of the centre, Gina Tsoukala, who has not been paid for nearly a year, says she can't quit because she feels she owes it to the residents to stay and fight their cause...

"Obviously we shouldn't have cages here but it is impossible for us to manage without them when we have such low levels of staff."

"Some of the residents have self-destructive tendencies or are quarrelsome and so on the advice of a doctor we have to use these wooden partitions. But the children are still free to communicate and to some degree to interact with each other."

The director says only the very basic needs of the children can be covered by her staff. In one shift, a nurse and assistant have to change the nappies of more than 20 residents, hose them down, spoon feed them and medicate them.

"We are doing everything we can but we do not have the resources to give anything else," says Tsoukala.

The excuses, shortages of funds and staff, sound so familiar. C.’s school’s administrator trots out the same lines in response to every complaint we’ve made. Which is why I’ve just stopped complaining to her.

It’s important to emphasize that children with disabilities are vulnerable even in family settings. Lumos faces the enormous challenge of supporting and supervising the homes to which institutionalized children will be transferred. The many stories of children abused and murdered by their biological, adoptive or foster parents attest to that.

But certainly nobody can argue that these large institutions must be shuttered. I wonder when Lumos will visit the government-subsidized large, closed (and growing) institutions in my own country?

PS: My favorite reader (for the sake of transparency: my son) promptly enlightened me about the “book-less book launch” [see "Elusive books and elusive kicks"]. It seems that the launch and publication of a book can be unrelated. Sometimes a publisher throws a launch as soon as the editing is complete – occasionally without even notifying the author.

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About my blog

C. is the youngest of our children. She suffers from severe epilepsy, blindness, microcephaly and profound cognitive and physical impairment.

We have faced hurdles and gained insights through our encounters with the medical, educational and governmental establishments.

Nobody was there to help or guide us.

I would love to spare parents in the same predicament some of the painful mistakes and wasted efforts we have made.

I am also eager to promote greater acceptance, inclusion and appreciation of our children. The new, heightened awareness of people with disabilities tends to gloss over our children - the ones with profound disabilities. They are a forgotten minority within this minority. Still marginalized and even shunned by many "enlightened" societies, they are a long way off from achieving equal rights.